Personal Health Records (PHRs) are an important research resource in a variety of disciplines in the humanities, social sciences and medicine. In this project, PHRs are defined as records that relate to the physical and mental health of an identifiable individual that have been made by or on the advice of a health professional in connection with that patient’s care and treatment. PHRs come in a variety of different formats, ranging from a 17th century prescription to a 20th century x-ray.
They are unique and important as individual records but, examined collectively, PHRs can provide vital data for the researcher. The geographical dispersal of PHRs in Scotland means that it is difficult to identify and access all material relevant to any given line of enquiry.
The aim of the project has been to unlock the potential of this valuable resource by facilitating access to geographically displaced material.
These activities have raised the profile of PHRs as a valuable research resource. This is particularly important at a time when the medical profession has embraced a patient-focused orientation, and when new data protection and freedom of information legislation has the potential to change the ways in which PHRs might be used to develop the patient-care knowledge base. Identifying PHRs in their various formats as an important historical resource will also go some way to ensuring that they are preserved now and in the future.
The survey was completed in 2001 and has led to a greater understanding of the extent and nature of PHRs in Scotland. It has also helped to map the geographical location of the major holdings of PHRs.
The data gathered during the survey process have been used to create descriptions of over 1000 record series and items which conform to the General International Standard for Archival Description (ISAD(G), 2nd ed.). They have been indexed using Library of Congress, National Library of Medicine Medical Subject Headings (MeSH) and other relevant historical terms.
The record descriptions can be searched online using a custom-built application. The Clinical Notes website also has other resources for researchers, including a report of the survey process and its findings, digitised examples of the main types of PHRs held in the database, and other information relating to the use of PHRs for research.
The academic user group for the project consisted of clinicians, historians and archivists involved in the use of PHRs for research. It has been consulted on two occasions during the course of the project to ensure that the development of online resources served the needs of a wide range of researchers.
The organisations involved have provided invaluable assistance in all areas of the project. The Project team has met on five occasions to discuss progress and how best to ensure that project targets were met.
Tel: 0131 650 3392
E-mail: M.Barfoot@ed.ac.uk
http://www.clinicalnotes.ac.uk
Content: Gill Davenport
Last updated 2 July 2002